Short post For Newbies

[RoyceNewton]

Relapsing Rermitting ms (RRms) Sisters and Brothers. Newly Diagnosed ( newbie), stop crying here is some reality. YOU have a chronic incurable condition, with NO cure NONE. BUT and it is a hughe BUT, YOU CAN live with this condition. A lot of have and YOU will as well. I think I am on year 25. Yes I should know the exact date but, it is really not that important to me and it should not be to YOU also.

Work with your neurologist (Neuro} and find a Disease Modifying Therapy (DMT) that works for YOU. They all hurt at first but eventually your body will accept the medicine. REMEMBER it is not a CURE. There is no cure, yet. Maybe one, Just NOT today. Either way YOU have a very long RRme journey ahead of YOU, lifelong actually.

So, wipe the tears away, brace yourself, Stand up straight and start making your RRms journey as comfortable as YOU CAN for YOU.Exercoise as well and eat cleanly.

Be VERY well,

Royce 👍

[twooldcrows]

well said and it is all so true and we do just keep going for no matter how many years that we have had it ...i am close to you but not sure when i actually got it ,just have a date that i was told i had it...ahhahahha...covers for all of the years that had weird things going on with my body and no doc could tell me what was wrong but they would say just in your head ...hahahha..i thought they were just saying they didn't know so of course it was in my mind but now we do know that it was but they just didn't know that it was really...hahhahaha..joke on me but now i can blame it all on my head and MS...i can and will just keep laughing ....would love to talk to all of them and tell that they were right but just not the way that they had been trying to say i was nuts ...hahahahah...lots of giggles ...life is just what we make it ...take care and be safe...live it to the best that you can for you are still the same person and might have to change a fews things off and on but you will be fine ....love yourself ...

[Cwright170994 in reply to twooldcrows]

I was the same with my 1st GP (general practitioner that sees you for illnesses before referring you on to someone who specialises in whatever's going on).

I'd go to him the morning after I had a simple partial seizure during the night, asking to be referred to a neurologist, and he told me I was having panic attacks and prescribed me citalopram! More fool him 😏 actually got referred to one when I had a seizure in the morning and a seizure as a triage nurse was doing a pupil reaction test when I went to A&E that sane morning! This neurologist had me do an evoked potential test, which showed something slowing down the signals from my left eye to the occipital lobe, an MRI, and then a hospital stay where I had a lumbar puncture. I was started on lamotrigine during that stay. When I went to the GP to get more lamotrigine, he turned WHITE, realising I was right all along 😂 pretty difficult, given that he was Indian 🤣 then I went to university, where in my 2nd year I had vertigo. Went to those GPs, and they told me I have a euscation tube blockage (the "pipes" to help you balance). I'd hate to think what they'd have done if I told them I couldn't feel half of my face when that happened 🤣 thankfully, the neurologist had given me a number for his MS nurses, so I called them 1st. They got me an appointment with that neurologist, who hmdid a pinprick test on my face and another MRI, and then gave me my clinically definite diagnosis of RRMS and started on copaxone. Was alright for a few years, until I started having generalised seizures. The lot that got me hospitalised was the 1st of my status epilipticus events, and that got me onto ocrevus! That neurologist did try me on tysabri, but it was found I was JCV positive on the 1st dose, so back to copaxone for a few months 😅

So yeah, it is all in my head, but not in the way the firs GP thought it was, nor the 2nd lot of GPs 🤣 my now-husband has been with me practically from the start, when I met him during the 2nd or 3rd semester of my 1st year of university. He was there when I had the first of my simple partials at university. He was scared when I told him I'd just had a seizure, because his best friend has generalised epilepsy, but when I told him I had CIS, and then RRMS thinking he'd go, because I couldn't bring myself to make him walk this path with me against his wishes. He stayed with me when I dropped out, he stayed with me when I quit my 1st work and got a job closer to where he lived, he stayed with me when I quit that work when I couldn't walk properly anymore, he stayed with me when I had my 1st generalised seizure, knowing what to do because I was with him and his best friend when his best friend had one. I was doing a nursing degree when I met him, so I knew what to do when someone has suddenly fallen and they're unable to get up by themselves for some time and to start a timer when someone has a seizure, and to call 999 when it's lasted over 5 mins. We laugh about what's going on in my head, especially when I do something he doesn't understand why I did it and I point to my head if I can't explain it either 🤣

[Cwright170994]

Make fun of the chronic situation you're in, because it's a way to help you get through your life without breaking down. Take all the help you can get, because it'll make every day livable. Get copies of your medical notes (helps to ask to be carbon copied into them all), because it might get you extra perks, especially from governments! I know when I was applying for a disability benefit in the UK, they 1st told me I wasn't disabled enough to get it. I sure cried for a few days until I got my medical records and appealed with them. Oh boy! They certainly got scared, and awarded me quite a large monthly amount with backpay! I remember that morning, logging onto my bank account, seeing that huge amount of money, and I happy-screamed my now-husband awake! 🤣

Do something Bear Grylls once said: adapt, survive, WIN! Win in as many small steps you can, from getting something to help you get around places, to getting a disability parking badge, to getting a vehicle that the government essentially pays for you when you receive a part of disability benefits. It will benefit YOU, and everyone who comes into contact with you

[Robsmom]

Well said Royce!